› Forums › General Melanoma Community › Diagnosed This Week…Uncertain about a few things.
- This topic has 81 replies, 7 voices, and was last updated 11 years, 8 months ago by
MattF.
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- August 16, 2012 at 9:50 pm
I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.
I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain.
I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.
I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain.
Malignent Melanoma Tumor – Thickness unknown but over 1mm, Ulceration unknown, Mitotic Index 5/mm2, Clarks level IV-V, loosely Pathological staged as T2b
My dermatologist didn't think it was Melanoma so he did a shave biopsy rather than a punch. For this reason the pathologist couldn't get an accurate thickness, among other important pieces of information.
Now I'm just waiting on Surgical Oncology to call to make initial appointment.
My question is beyond brain tumor is it possible my melanoma has pread under my skin in a horizontal fashion creating headaches and sensitivity to touch?
- Replies
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- August 16, 2012 at 10:35 pm
Is it possible that your migraines are related? Yes, it is possible. The sensitivity to touch sounds more like a migraine symptom, though, than anything I've heard of related to MM. And since you don't know the depth of your lesion, there is no way to say likely/unlikely. The melanoma wouldn't spread "under the skin", though. Melanoma travels via lymph vessels or blood vessels. So the melanoma lesion would have grown down in the skin until it found one of these types of vessels. From there, it could have spread to the lymph nodes in the neck or to other organs if it were in the blood vessels. I'm not saying this is what is happening to you, but these are possibilities. Normally at this point, they would be doing a Sentinel Node Biopsy to determine if the lesion has spread to your neck lymph nodes. However, given your symptoms, I would be requesting a brain MRI before I'd let them do any surgery. If you have a brain metastasis, that needs to be taken care of first and the lymph nodes are secondary. I see you are waiting for an appointment with a surgical oncologist, but given your symptoms I would probably want a melanoma specialist (not surgeon) in on the equation to order a brain MRI before I'd have the surgeon do any cutting. Maybe the surgical oncologist would suggest the same thing – I don't know. But I'd rule out the worst here before I'd do any cutting. Just as a final note, it is also very possible that you are just experiencing migraines and that none of your symptoms are melanoma related. Please keep that at the forefront of your mind. A brain metastasis doesn't have to been the culrpit.
Best wishes,
Janner
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- August 16, 2012 at 10:35 pm
Is it possible that your migraines are related? Yes, it is possible. The sensitivity to touch sounds more like a migraine symptom, though, than anything I've heard of related to MM. And since you don't know the depth of your lesion, there is no way to say likely/unlikely. The melanoma wouldn't spread "under the skin", though. Melanoma travels via lymph vessels or blood vessels. So the melanoma lesion would have grown down in the skin until it found one of these types of vessels. From there, it could have spread to the lymph nodes in the neck or to other organs if it were in the blood vessels. I'm not saying this is what is happening to you, but these are possibilities. Normally at this point, they would be doing a Sentinel Node Biopsy to determine if the lesion has spread to your neck lymph nodes. However, given your symptoms, I would be requesting a brain MRI before I'd let them do any surgery. If you have a brain metastasis, that needs to be taken care of first and the lymph nodes are secondary. I see you are waiting for an appointment with a surgical oncologist, but given your symptoms I would probably want a melanoma specialist (not surgeon) in on the equation to order a brain MRI before I'd have the surgeon do any cutting. Maybe the surgical oncologist would suggest the same thing – I don't know. But I'd rule out the worst here before I'd do any cutting. Just as a final note, it is also very possible that you are just experiencing migraines and that none of your symptoms are melanoma related. Please keep that at the forefront of your mind. A brain metastasis doesn't have to been the culrpit.
Best wishes,
Janner
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- August 16, 2012 at 10:56 pm
Janner
Thanks.
Yes I know it is possible that it really is just migraines but I have never had them before and they are so inconsistant in intensity and occurence I'm just not convinced that is what they are. They only started a year ago.
I agree I want an MRI before they do anything I hope that the consult put in by my dermatologist is for a Melanoma Specialist but he said Surgical Oncologist which meands when i meat with them I will have to show them medical records and explain my symptoms to get the MRI. Then maybe we can move forward.
And I dod hate not knowing the thickness of my tumor. I wasn't sure if it can sread under the skin. i know it grows vertical (which is what growth phase mine is in) but i also know it can spread outside the skin horizontally. One of the questions to ask your doctor listed on the American Cancer Society Melanoma Fact Sheet is "How far my melanoma has spread within or under my skin, separate from spreading to the body via Lymph and Blood?" so i was curious if anyone had heard of that.
Matt
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- August 16, 2012 at 11:38 pm
2 things. If you'd had an untreated melanoma brain tumor for a year, I doubt you'd be here now. They're not known for just hanging around and taking there own sweet time to grow. Untreated brain tumors probably have a 6 month life expectancy. This is why I'd think migraine is very probable. A MRI will give you additional info to make good choices from this point on.
As for spreading under the skin, the method of spread is still via lymph vessels. You have lymph vessels (trash collectors) all through the base of the skin. In transit lesions or sub-q's are the results of melanoma in the lymph vessels locally, but not in the lymph node basins. It really doesn't matter the method, just if it has happened or not. And yes, not knowing the depth is a major drag. It's why I hate shave biopsies. But most people going in trust the derm to make the right choice. Many derms still stand by shave biopsies, but I will never have one again.
Janner
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- August 17, 2012 at 2:26 am
Sorry to hear about your diagnosis… no sure about the sensitivity to touch piece. Hopefully the surgical oncologist calls soon to get the appointment set up! My dermatologist thought the mole on my back was nothing. She told me several times in a few weeks I'd get a letter in the mail saying it was nothing. The next week she was calling me in to her office to tell me I had melanoma. The good thing is that she went ahead and had an appointment with a surgical oncologist at UNC-Chapel Hill set up for the very next day.
Hang in there! Thoughts and prayers your way.
Erin
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- August 17, 2012 at 2:26 am
Sorry to hear about your diagnosis… no sure about the sensitivity to touch piece. Hopefully the surgical oncologist calls soon to get the appointment set up! My dermatologist thought the mole on my back was nothing. She told me several times in a few weeks I'd get a letter in the mail saying it was nothing. The next week she was calling me in to her office to tell me I had melanoma. The good thing is that she went ahead and had an appointment with a surgical oncologist at UNC-Chapel Hill set up for the very next day.
Hang in there! Thoughts and prayers your way.
Erin
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- August 17, 2012 at 2:26 am
Sorry to hear about your diagnosis… no sure about the sensitivity to touch piece. Hopefully the surgical oncologist calls soon to get the appointment set up! My dermatologist thought the mole on my back was nothing. She told me several times in a few weeks I'd get a letter in the mail saying it was nothing. The next week she was calling me in to her office to tell me I had melanoma. The good thing is that she went ahead and had an appointment with a surgical oncologist at UNC-Chapel Hill set up for the very next day.
Hang in there! Thoughts and prayers your way.
Erin
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- August 20, 2012 at 3:22 am
Yes my pathology report was very complete. Basically when I saw the onc he said next steps were for them to do a WLE and sentinel lymph node biopsy. They just did a few blood tests and chest xray before the first surgery. After my sentinel lymph node came back positive, they went ahead and did the CT/PET scan and brain MRI. When those came back clear they did the 2nd surgery to go ahead and remove all my lymph nodes under my right arm.
Hope that helps.
Erin
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- August 20, 2012 at 3:22 am
Yes my pathology report was very complete. Basically when I saw the onc he said next steps were for them to do a WLE and sentinel lymph node biopsy. They just did a few blood tests and chest xray before the first surgery. After my sentinel lymph node came back positive, they went ahead and did the CT/PET scan and brain MRI. When those came back clear they did the 2nd surgery to go ahead and remove all my lymph nodes under my right arm.
Hope that helps.
Erin
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- August 20, 2012 at 3:22 am
Yes my pathology report was very complete. Basically when I saw the onc he said next steps were for them to do a WLE and sentinel lymph node biopsy. They just did a few blood tests and chest xray before the first surgery. After my sentinel lymph node came back positive, they went ahead and did the CT/PET scan and brain MRI. When those came back clear they did the 2nd surgery to go ahead and remove all my lymph nodes under my right arm.
Hope that helps.
Erin
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- August 17, 2012 at 2:43 am
Not even deep shave/saucerization?
No. None of the above. Besides possibly compromising the depth, they hurt more and heal worse on me. I think most docs use them because they are easy and quick – and that doesn't work for me. It's my body and I'm the one who suffers if they screw up, not the doc. I've seen the study saying most WLE's show no additional melanoma, but it still doesn't sit well with me. I want to know the exact depth, not some approximation because the derm didn't get it all. Luckily for me, my derm agrees. I won't compromise on this issue even if it means delaying the biopsy until I can a surgical appointment.
Janner
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- August 17, 2012 at 2:43 am
Not even deep shave/saucerization?
No. None of the above. Besides possibly compromising the depth, they hurt more and heal worse on me. I think most docs use them because they are easy and quick – and that doesn't work for me. It's my body and I'm the one who suffers if they screw up, not the doc. I've seen the study saying most WLE's show no additional melanoma, but it still doesn't sit well with me. I want to know the exact depth, not some approximation because the derm didn't get it all. Luckily for me, my derm agrees. I won't compromise on this issue even if it means delaying the biopsy until I can a surgical appointment.
Janner
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- August 17, 2012 at 2:43 am
Not even deep shave/saucerization?
No. None of the above. Besides possibly compromising the depth, they hurt more and heal worse on me. I think most docs use them because they are easy and quick – and that doesn't work for me. It's my body and I'm the one who suffers if they screw up, not the doc. I've seen the study saying most WLE's show no additional melanoma, but it still doesn't sit well with me. I want to know the exact depth, not some approximation because the derm didn't get it all. Luckily for me, my derm agrees. I won't compromise on this issue even if it means delaying the biopsy until I can a surgical appointment.
Janner
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- August 16, 2012 at 11:38 pm
2 things. If you'd had an untreated melanoma brain tumor for a year, I doubt you'd be here now. They're not known for just hanging around and taking there own sweet time to grow. Untreated brain tumors probably have a 6 month life expectancy. This is why I'd think migraine is very probable. A MRI will give you additional info to make good choices from this point on.
As for spreading under the skin, the method of spread is still via lymph vessels. You have lymph vessels (trash collectors) all through the base of the skin. In transit lesions or sub-q's are the results of melanoma in the lymph vessels locally, but not in the lymph node basins. It really doesn't matter the method, just if it has happened or not. And yes, not knowing the depth is a major drag. It's why I hate shave biopsies. But most people going in trust the derm to make the right choice. Many derms still stand by shave biopsies, but I will never have one again.
Janner
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- August 16, 2012 at 11:38 pm
2 things. If you'd had an untreated melanoma brain tumor for a year, I doubt you'd be here now. They're not known for just hanging around and taking there own sweet time to grow. Untreated brain tumors probably have a 6 month life expectancy. This is why I'd think migraine is very probable. A MRI will give you additional info to make good choices from this point on.
As for spreading under the skin, the method of spread is still via lymph vessels. You have lymph vessels (trash collectors) all through the base of the skin. In transit lesions or sub-q's are the results of melanoma in the lymph vessels locally, but not in the lymph node basins. It really doesn't matter the method, just if it has happened or not. And yes, not knowing the depth is a major drag. It's why I hate shave biopsies. But most people going in trust the derm to make the right choice. Many derms still stand by shave biopsies, but I will never have one again.
Janner
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- August 16, 2012 at 10:56 pm
Janner
Thanks.
Yes I know it is possible that it really is just migraines but I have never had them before and they are so inconsistant in intensity and occurence I'm just not convinced that is what they are. They only started a year ago.
I agree I want an MRI before they do anything I hope that the consult put in by my dermatologist is for a Melanoma Specialist but he said Surgical Oncologist which meands when i meat with them I will have to show them medical records and explain my symptoms to get the MRI. Then maybe we can move forward.
And I dod hate not knowing the thickness of my tumor. I wasn't sure if it can sread under the skin. i know it grows vertical (which is what growth phase mine is in) but i also know it can spread outside the skin horizontally. One of the questions to ask your doctor listed on the American Cancer Society Melanoma Fact Sheet is "How far my melanoma has spread within or under my skin, separate from spreading to the body via Lymph and Blood?" so i was curious if anyone had heard of that.
Matt
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- August 16, 2012 at 10:56 pm
Janner
Thanks.
Yes I know it is possible that it really is just migraines but I have never had them before and they are so inconsistant in intensity and occurence I'm just not convinced that is what they are. They only started a year ago.
I agree I want an MRI before they do anything I hope that the consult put in by my dermatologist is for a Melanoma Specialist but he said Surgical Oncologist which meands when i meat with them I will have to show them medical records and explain my symptoms to get the MRI. Then maybe we can move forward.
And I dod hate not knowing the thickness of my tumor. I wasn't sure if it can sread under the skin. i know it grows vertical (which is what growth phase mine is in) but i also know it can spread outside the skin horizontally. One of the questions to ask your doctor listed on the American Cancer Society Melanoma Fact Sheet is "How far my melanoma has spread within or under my skin, separate from spreading to the body via Lymph and Blood?" so i was curious if anyone had heard of that.
Matt
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- August 16, 2012 at 10:35 pm
Is it possible that your migraines are related? Yes, it is possible. The sensitivity to touch sounds more like a migraine symptom, though, than anything I've heard of related to MM. And since you don't know the depth of your lesion, there is no way to say likely/unlikely. The melanoma wouldn't spread "under the skin", though. Melanoma travels via lymph vessels or blood vessels. So the melanoma lesion would have grown down in the skin until it found one of these types of vessels. From there, it could have spread to the lymph nodes in the neck or to other organs if it were in the blood vessels. I'm not saying this is what is happening to you, but these are possibilities. Normally at this point, they would be doing a Sentinel Node Biopsy to determine if the lesion has spread to your neck lymph nodes. However, given your symptoms, I would be requesting a brain MRI before I'd let them do any surgery. If you have a brain metastasis, that needs to be taken care of first and the lymph nodes are secondary. I see you are waiting for an appointment with a surgical oncologist, but given your symptoms I would probably want a melanoma specialist (not surgeon) in on the equation to order a brain MRI before I'd have the surgeon do any cutting. Maybe the surgical oncologist would suggest the same thing – I don't know. But I'd rule out the worst here before I'd do any cutting. Just as a final note, it is also very possible that you are just experiencing migraines and that none of your symptoms are melanoma related. Please keep that at the forefront of your mind. A brain metastasis doesn't have to been the culrpit.
Best wishes,
Janner
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- August 19, 2012 at 5:40 pm
Hi Matt,
I had a T2a with the same mitotic rate as you.
I began having migraine with aura for the first time in my life about 3 mos. before melanoma was diagnosed. I also have episodes of dim vision. I am having a brain MRI tomorrow to check for intermittent bleeding as the cause.
I suggest that you call your neurologist tomorrow, explain your melanoma diagnosis and ask the neurologist to schedule a brain MRI so you have those results to take with you to your August 31 appt.
Sorry you are dealing with this, I hope the excision on your cheek goes well and that our head issues are unrelated to melanoma.
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- August 19, 2012 at 5:40 pm
Hi Matt,
I had a T2a with the same mitotic rate as you.
I began having migraine with aura for the first time in my life about 3 mos. before melanoma was diagnosed. I also have episodes of dim vision. I am having a brain MRI tomorrow to check for intermittent bleeding as the cause.
I suggest that you call your neurologist tomorrow, explain your melanoma diagnosis and ask the neurologist to schedule a brain MRI so you have those results to take with you to your August 31 appt.
Sorry you are dealing with this, I hope the excision on your cheek goes well and that our head issues are unrelated to melanoma.
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- August 20, 2012 at 1:05 am
Minnesota
Thanks for replying. I actually intend on telling my PCP about the fact that the pupil on the side of my Melanoma is a different size than the other. He already knows about my headaches and Neurologist knows about diagnosis. I was told the MRI I had last Aug showed nothing significant so I shouldn't worry..lol.
I have a neurologist apt on Sept 5th but don't think he could get me a scan before Aug 31st if i went in tomorrow and I was actually told to let the Oncologist order what they want on the 31st.
The headaches and pupils are annoying and concerning, especially because my pathology report was so limited…with statements like "atleast 1mm" and "atleast Clarks Level IV".
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- August 20, 2012 at 1:05 am
Minnesota
Thanks for replying. I actually intend on telling my PCP about the fact that the pupil on the side of my Melanoma is a different size than the other. He already knows about my headaches and Neurologist knows about diagnosis. I was told the MRI I had last Aug showed nothing significant so I shouldn't worry..lol.
I have a neurologist apt on Sept 5th but don't think he could get me a scan before Aug 31st if i went in tomorrow and I was actually told to let the Oncologist order what they want on the 31st.
The headaches and pupils are annoying and concerning, especially because my pathology report was so limited…with statements like "atleast 1mm" and "atleast Clarks Level IV".
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- August 20, 2012 at 2:29 am
Just a little FYI, it's actually not that uncommon to have different sized pupils. (Research gleaned long ago when LASIK was just starting out and pupil size wasn't always regarded as important). Anyway, I have different sized pupils (documented in 1999) and while I've had many eye issues and surgeries, my eyes are basically fine with the right pupil larger than the left.
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- August 20, 2012 at 2:29 am
Just a little FYI, it's actually not that uncommon to have different sized pupils. (Research gleaned long ago when LASIK was just starting out and pupil size wasn't always regarded as important). Anyway, I have different sized pupils (documented in 1999) and while I've had many eye issues and surgeries, my eyes are basically fine with the right pupil larger than the left.
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- August 20, 2012 at 2:29 am
Just a little FYI, it's actually not that uncommon to have different sized pupils. (Research gleaned long ago when LASIK was just starting out and pupil size wasn't always regarded as important). Anyway, I have different sized pupils (documented in 1999) and while I've had many eye issues and surgeries, my eyes are basically fine with the right pupil larger than the left.
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- August 20, 2012 at 5:15 pm
I'm glad to hear that you had an MRI last year. I would still ask for another, especially since it's been a year.
The most important thing right now is to have the excision done. Can you get on a cancellation waiting list and possibly get in before August 31? It doesn't seem reasonable to me that you should wait that long when the tumor is not fully removed. Because it's on your face, they will probably want a cosmetic surgeon to do that part of the surgery and possibly another surgeon to do a sentinel lymph node biopsy. I wouldn't want to wait 11 days to talk to someone before all this begins to get coordinated because it has to get done.
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- August 20, 2012 at 5:48 pm
I was wondering if it is normal to wait 10 days to get into the Oncologist. Again that isn't for the excision removal surgery that is just the first meeting with oncologist.
I would assume he will have to schedule surgery with a surgeon as I think mine is just a general oncologist and probably need to have a plastic, ear nose throat and possibly and opthomologist involved since tumor is at the base of my ear about 2 inches from eye.
My guess is that may take some time also after the 31st.
When I called to make the appointment they asked why I need seen and I said diagnosed with Melanoma and I did not elaborate "hey by the way it is still in me". Maybe I should have.
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- August 20, 2012 at 8:25 pm
I'm not sure how long folks typically wait. I was very fortunate to have things move quickly for me. My dermatologist got the results and called me in on Oct 14th, 2010 and she had an appointment set up with the surgical oncologist for me the very next day.
When I saw him he thought it would be a few weeks before I could get in for surgery. I was in the middle of moving and told him his. He made room in his schedule to do the initial surgery the 19th. I saw him on a Friday and then Tuesday I was having surgery.
It took a few more weeks to get in to Sloan when I moved up here. But at that point all my surgery was done and I was just trying to determine what medical route I went. But I did put in an online request Dec 26th and I had my first appointment with them Jan 11th. So it took a few weeks. But part of that was also so there was time to get slides/reports from UNC to Sloan and have them review.
Best of luck! They really do test our patience thru all this!
Erin
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- August 20, 2012 at 8:25 pm
I'm not sure how long folks typically wait. I was very fortunate to have things move quickly for me. My dermatologist got the results and called me in on Oct 14th, 2010 and she had an appointment set up with the surgical oncologist for me the very next day.
When I saw him he thought it would be a few weeks before I could get in for surgery. I was in the middle of moving and told him his. He made room in his schedule to do the initial surgery the 19th. I saw him on a Friday and then Tuesday I was having surgery.
It took a few more weeks to get in to Sloan when I moved up here. But at that point all my surgery was done and I was just trying to determine what medical route I went. But I did put in an online request Dec 26th and I had my first appointment with them Jan 11th. So it took a few weeks. But part of that was also so there was time to get slides/reports from UNC to Sloan and have them review.
Best of luck! They really do test our patience thru all this!
Erin
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- August 20, 2012 at 8:25 pm
I'm not sure how long folks typically wait. I was very fortunate to have things move quickly for me. My dermatologist got the results and called me in on Oct 14th, 2010 and she had an appointment set up with the surgical oncologist for me the very next day.
When I saw him he thought it would be a few weeks before I could get in for surgery. I was in the middle of moving and told him his. He made room in his schedule to do the initial surgery the 19th. I saw him on a Friday and then Tuesday I was having surgery.
It took a few more weeks to get in to Sloan when I moved up here. But at that point all my surgery was done and I was just trying to determine what medical route I went. But I did put in an online request Dec 26th and I had my first appointment with them Jan 11th. So it took a few weeks. But part of that was also so there was time to get slides/reports from UNC to Sloan and have them review.
Best of luck! They really do test our patience thru all this!
Erin
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- August 20, 2012 at 10:18 pm
Exactly – that's my concern for you.
I don't think the time frame is unreasonable for someone who had an excision and is waiting to have a wider excision and SLNB, but for you, they need to get all of that tumor out and it's going to take some coordination.
Get past the scheduling person and explain all you can so they can start doing the legwork before you are seen. The main thing is that there is no question that the tumor has to come out, the question is, "how are we going to do it and who do we need here during surgery."
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- August 20, 2012 at 10:18 pm
Exactly – that's my concern for you.
I don't think the time frame is unreasonable for someone who had an excision and is waiting to have a wider excision and SLNB, but for you, they need to get all of that tumor out and it's going to take some coordination.
Get past the scheduling person and explain all you can so they can start doing the legwork before you are seen. The main thing is that there is no question that the tumor has to come out, the question is, "how are we going to do it and who do we need here during surgery."
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- August 20, 2012 at 10:18 pm
Exactly – that's my concern for you.
I don't think the time frame is unreasonable for someone who had an excision and is waiting to have a wider excision and SLNB, but for you, they need to get all of that tumor out and it's going to take some coordination.
Get past the scheduling person and explain all you can so they can start doing the legwork before you are seen. The main thing is that there is no question that the tumor has to come out, the question is, "how are we going to do it and who do we need here during surgery."
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- August 21, 2012 at 1:27 am
Thanks everyone
I took your advice and called the oncologist back. The lady who does scheduling pulled up my name and said of you shouldn't be waiting two weeks. (I'm not sure but they may have officially gotten my file and consult from my dermatologist and health insurance). So she moved my appt to this Fri 24th of Aug.
I wasn't smart enough to make sure they have my file on the phone so I will call tomorrow and talk to the people in the office (not scheduling dept) and see if there is any part of my records they need hand delivered tomorrow so they have 2-3 days with them before my appt to make appropriate plans.
Thanks again.
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- August 21, 2012 at 1:27 am
Thanks everyone
I took your advice and called the oncologist back. The lady who does scheduling pulled up my name and said of you shouldn't be waiting two weeks. (I'm not sure but they may have officially gotten my file and consult from my dermatologist and health insurance). So she moved my appt to this Fri 24th of Aug.
I wasn't smart enough to make sure they have my file on the phone so I will call tomorrow and talk to the people in the office (not scheduling dept) and see if there is any part of my records they need hand delivered tomorrow so they have 2-3 days with them before my appt to make appropriate plans.
Thanks again.
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- August 21, 2012 at 1:27 am
Thanks everyone
I took your advice and called the oncologist back. The lady who does scheduling pulled up my name and said of you shouldn't be waiting two weeks. (I'm not sure but they may have officially gotten my file and consult from my dermatologist and health insurance). So she moved my appt to this Fri 24th of Aug.
I wasn't smart enough to make sure they have my file on the phone so I will call tomorrow and talk to the people in the office (not scheduling dept) and see if there is any part of my records they need hand delivered tomorrow so they have 2-3 days with them before my appt to make appropriate plans.
Thanks again.
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- August 22, 2012 at 12:54 am
So get this everyone I call today just to make sure everything is good for Fri and the lady in the actual office of the oncologist pulls up my appointment and say "yep good for appt but we have no info as to why we are seeing you or where your were referred from etc"
So I marched my little happy ass over to my dermatologist office and was about to leave a messege for him when he walked in behind me carrying the lunch he just got. I told him what was up and he said come on back. He proceeded to create a 10 page packet of info with Path, labs, exams, etc and a note then faxed it all to the oncoloist and gave me a copy to take on Fri.
This staying proactive is work.
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- August 22, 2012 at 12:54 am
So get this everyone I call today just to make sure everything is good for Fri and the lady in the actual office of the oncologist pulls up my appointment and say "yep good for appt but we have no info as to why we are seeing you or where your were referred from etc"
So I marched my little happy ass over to my dermatologist office and was about to leave a messege for him when he walked in behind me carrying the lunch he just got. I told him what was up and he said come on back. He proceeded to create a 10 page packet of info with Path, labs, exams, etc and a note then faxed it all to the oncoloist and gave me a copy to take on Fri.
This staying proactive is work.
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- August 22, 2012 at 12:54 am
So get this everyone I call today just to make sure everything is good for Fri and the lady in the actual office of the oncologist pulls up my appointment and say "yep good for appt but we have no info as to why we are seeing you or where your were referred from etc"
So I marched my little happy ass over to my dermatologist office and was about to leave a messege for him when he walked in behind me carrying the lunch he just got. I told him what was up and he said come on back. He proceeded to create a 10 page packet of info with Path, labs, exams, etc and a note then faxed it all to the oncoloist and gave me a copy to take on Fri.
This staying proactive is work.
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- August 22, 2012 at 1:42 am
Sadly, this sort of thing happens a lot. Keep that copy and ask for a copy of everything while you are at anyone's office.
I hope the next two days go quickly for you. You'll feel better once you have the surgery scheduled, we all know how hard this is to go through so just know you have lots of friends here who have been through it.
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- August 22, 2012 at 1:42 am
Sadly, this sort of thing happens a lot. Keep that copy and ask for a copy of everything while you are at anyone's office.
I hope the next two days go quickly for you. You'll feel better once you have the surgery scheduled, we all know how hard this is to go through so just know you have lots of friends here who have been through it.
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- August 23, 2012 at 2:47 am
I shouldn't be worried about or stressed about my Doctor (General Oncologist) before i even meet him right? I mean he is at The Austin Cancer Center I have to assume they can set up the surgery and after that if I need referral to Melanoma Specialist they can do it then correct?
I'm just think about everything…trying to stay proactively zen about the whole thing.
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- August 23, 2012 at 2:47 am
I shouldn't be worried about or stressed about my Doctor (General Oncologist) before i even meet him right? I mean he is at The Austin Cancer Center I have to assume they can set up the surgery and after that if I need referral to Melanoma Specialist they can do it then correct?
I'm just think about everything…trying to stay proactively zen about the whole thing.
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- August 23, 2012 at 3:21 am
No, you shouldn't be stressed. I'm assuming he's a surgical oncologist from your earlier post. He will tell you whether he is going to do the entire surgery, or if he will have a specialist come in to do the excision by your ear.
What will probably happen is that you will have the excision surgery and a sentinel lymph node biopsy (SLNB) done at the same time. The reason you need to have a SLNB is because your tumor is at least 1mm.
(This is based on what happened to me) When you arrive the day of surgery, they send you to nuclear medicine to have an injection of dye in the tumor site (this hurts), and about 20 minutes later, they start taking pictures to find the path from your tumor to the sentinel lymph node. It "lights up" on the scans – this can take up to 2 hours. That surgery is first, and then they do the excision.
My tumor was 1.45mm and my mitotic rate was 5. My lymph node was clear. I haven't had to see a specialist or have any further treatment, and hopefully it will be the same for you. I just go to the dermatologist for a full skin check every 3 months (you will do the same).
I left the hospital an hour after I got out of recovery. They gave me vicodin for the pain to take home, and I think I only took about 5 of them over a few days time.
Be prepared for some alarm about your mitotic rate and ulceration, but don't assume the worst. Every tumor does its own thing, and it's very possible that yours was just a little bit over 1mm. Once this surgery is done, it could very well be the end of melanoma for you.
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- August 23, 2012 at 3:21 am
No, you shouldn't be stressed. I'm assuming he's a surgical oncologist from your earlier post. He will tell you whether he is going to do the entire surgery, or if he will have a specialist come in to do the excision by your ear.
What will probably happen is that you will have the excision surgery and a sentinel lymph node biopsy (SLNB) done at the same time. The reason you need to have a SLNB is because your tumor is at least 1mm.
(This is based on what happened to me) When you arrive the day of surgery, they send you to nuclear medicine to have an injection of dye in the tumor site (this hurts), and about 20 minutes later, they start taking pictures to find the path from your tumor to the sentinel lymph node. It "lights up" on the scans – this can take up to 2 hours. That surgery is first, and then they do the excision.
My tumor was 1.45mm and my mitotic rate was 5. My lymph node was clear. I haven't had to see a specialist or have any further treatment, and hopefully it will be the same for you. I just go to the dermatologist for a full skin check every 3 months (you will do the same).
I left the hospital an hour after I got out of recovery. They gave me vicodin for the pain to take home, and I think I only took about 5 of them over a few days time.
Be prepared for some alarm about your mitotic rate and ulceration, but don't assume the worst. Every tumor does its own thing, and it's very possible that yours was just a little bit over 1mm. Once this surgery is done, it could very well be the end of melanoma for you.
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- August 23, 2012 at 3:21 am
No, you shouldn't be stressed. I'm assuming he's a surgical oncologist from your earlier post. He will tell you whether he is going to do the entire surgery, or if he will have a specialist come in to do the excision by your ear.
What will probably happen is that you will have the excision surgery and a sentinel lymph node biopsy (SLNB) done at the same time. The reason you need to have a SLNB is because your tumor is at least 1mm.
(This is based on what happened to me) When you arrive the day of surgery, they send you to nuclear medicine to have an injection of dye in the tumor site (this hurts), and about 20 minutes later, they start taking pictures to find the path from your tumor to the sentinel lymph node. It "lights up" on the scans – this can take up to 2 hours. That surgery is first, and then they do the excision.
My tumor was 1.45mm and my mitotic rate was 5. My lymph node was clear. I haven't had to see a specialist or have any further treatment, and hopefully it will be the same for you. I just go to the dermatologist for a full skin check every 3 months (you will do the same).
I left the hospital an hour after I got out of recovery. They gave me vicodin for the pain to take home, and I think I only took about 5 of them over a few days time.
Be prepared for some alarm about your mitotic rate and ulceration, but don't assume the worst. Every tumor does its own thing, and it's very possible that yours was just a little bit over 1mm. Once this surgery is done, it could very well be the end of melanoma for you.
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- August 23, 2012 at 2:47 am
I shouldn't be worried about or stressed about my Doctor (General Oncologist) before i even meet him right? I mean he is at The Austin Cancer Center I have to assume they can set up the surgery and after that if I need referral to Melanoma Specialist they can do it then correct?
I'm just think about everything…trying to stay proactively zen about the whole thing.
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- August 22, 2012 at 1:42 am
Sadly, this sort of thing happens a lot. Keep that copy and ask for a copy of everything while you are at anyone's office.
I hope the next two days go quickly for you. You'll feel better once you have the surgery scheduled, we all know how hard this is to go through so just know you have lots of friends here who have been through it.
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- August 20, 2012 at 5:48 pm
I was wondering if it is normal to wait 10 days to get into the Oncologist. Again that isn't for the excision removal surgery that is just the first meeting with oncologist.
I would assume he will have to schedule surgery with a surgeon as I think mine is just a general oncologist and probably need to have a plastic, ear nose throat and possibly and opthomologist involved since tumor is at the base of my ear about 2 inches from eye.
My guess is that may take some time also after the 31st.
When I called to make the appointment they asked why I need seen and I said diagnosed with Melanoma and I did not elaborate "hey by the way it is still in me". Maybe I should have.
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- August 20, 2012 at 5:48 pm
I was wondering if it is normal to wait 10 days to get into the Oncologist. Again that isn't for the excision removal surgery that is just the first meeting with oncologist.
I would assume he will have to schedule surgery with a surgeon as I think mine is just a general oncologist and probably need to have a plastic, ear nose throat and possibly and opthomologist involved since tumor is at the base of my ear about 2 inches from eye.
My guess is that may take some time also after the 31st.
When I called to make the appointment they asked why I need seen and I said diagnosed with Melanoma and I did not elaborate "hey by the way it is still in me". Maybe I should have.
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- August 20, 2012 at 5:15 pm
I'm glad to hear that you had an MRI last year. I would still ask for another, especially since it's been a year.
The most important thing right now is to have the excision done. Can you get on a cancellation waiting list and possibly get in before August 31? It doesn't seem reasonable to me that you should wait that long when the tumor is not fully removed. Because it's on your face, they will probably want a cosmetic surgeon to do that part of the surgery and possibly another surgeon to do a sentinel lymph node biopsy. I wouldn't want to wait 11 days to talk to someone before all this begins to get coordinated because it has to get done.
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- August 20, 2012 at 5:15 pm
I'm glad to hear that you had an MRI last year. I would still ask for another, especially since it's been a year.
The most important thing right now is to have the excision done. Can you get on a cancellation waiting list and possibly get in before August 31? It doesn't seem reasonable to me that you should wait that long when the tumor is not fully removed. Because it's on your face, they will probably want a cosmetic surgeon to do that part of the surgery and possibly another surgeon to do a sentinel lymph node biopsy. I wouldn't want to wait 11 days to talk to someone before all this begins to get coordinated because it has to get done.
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- August 23, 2012 at 4:52 pm
SOOOO SORRY about your findings ! First and foremost – find yourself the best MELANOMA DOC in this Country that is closest and leave the Derms and Surgeons until later ! Our hometown Derm almost let my husband die !
Do not pass go, do not collect $100 – go to the nearest MELANOMA DOC you can get to no matter how far away it is. MDA has been rated Number one for umpteen years. There are others…..but go to the best of the best you can get to. They will take care of you from there.
Don't mess with small town docs, derms, surgeons !!! They do not know anything about Melanoma ! EXPERIENCE TALKING !
THE VERY BEST TO YOU !
Nancy (devoted wife of 3 X Warrior Wayne)
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- August 23, 2012 at 4:52 pm
SOOOO SORRY about your findings ! First and foremost – find yourself the best MELANOMA DOC in this Country that is closest and leave the Derms and Surgeons until later ! Our hometown Derm almost let my husband die !
Do not pass go, do not collect $100 – go to the nearest MELANOMA DOC you can get to no matter how far away it is. MDA has been rated Number one for umpteen years. There are others…..but go to the best of the best you can get to. They will take care of you from there.
Don't mess with small town docs, derms, surgeons !!! They do not know anything about Melanoma ! EXPERIENCE TALKING !
THE VERY BEST TO YOU !
Nancy (devoted wife of 3 X Warrior Wayne)
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- August 23, 2012 at 4:52 pm
SOOOO SORRY about your findings ! First and foremost – find yourself the best MELANOMA DOC in this Country that is closest and leave the Derms and Surgeons until later ! Our hometown Derm almost let my husband die !
Do not pass go, do not collect $100 – go to the nearest MELANOMA DOC you can get to no matter how far away it is. MDA has been rated Number one for umpteen years. There are others…..but go to the best of the best you can get to. They will take care of you from there.
Don't mess with small town docs, derms, surgeons !!! They do not know anything about Melanoma ! EXPERIENCE TALKING !
THE VERY BEST TO YOU !
Nancy (devoted wife of 3 X Warrior Wayne)
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- August 20, 2012 at 1:05 am
Minnesota
Thanks for replying. I actually intend on telling my PCP about the fact that the pupil on the side of my Melanoma is a different size than the other. He already knows about my headaches and Neurologist knows about diagnosis. I was told the MRI I had last Aug showed nothing significant so I shouldn't worry..lol.
I have a neurologist apt on Sept 5th but don't think he could get me a scan before Aug 31st if i went in tomorrow and I was actually told to let the Oncologist order what they want on the 31st.
The headaches and pupils are annoying and concerning, especially because my pathology report was so limited…with statements like "atleast 1mm" and "atleast Clarks Level IV".
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- August 19, 2012 at 5:40 pm
Hi Matt,
I had a T2a with the same mitotic rate as you.
I began having migraine with aura for the first time in my life about 3 mos. before melanoma was diagnosed. I also have episodes of dim vision. I am having a brain MRI tomorrow to check for intermittent bleeding as the cause.
I suggest that you call your neurologist tomorrow, explain your melanoma diagnosis and ask the neurologist to schedule a brain MRI so you have those results to take with you to your August 31 appt.
Sorry you are dealing with this, I hope the excision on your cheek goes well and that our head issues are unrelated to melanoma.
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- August 28, 2012 at 11:59 pm
Got accepted and the appointment set for 4 Sept at MDA to see Dr. Carol Lewis.
I know the 4th is initial and right now on the 5th I'm set for an "Ultrasound with biopsy" not entirely sure what to expect. And the care representitive told me to expect more procedures to be scheduled between now and then and I will find out about them when i arrive.
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- August 28, 2012 at 11:59 pm
Got accepted and the appointment set for 4 Sept at MDA to see Dr. Carol Lewis.
I know the 4th is initial and right now on the 5th I'm set for an "Ultrasound with biopsy" not entirely sure what to expect. And the care representitive told me to expect more procedures to be scheduled between now and then and I will find out about them when i arrive.
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- August 28, 2012 at 11:59 pm
Got accepted and the appointment set for 4 Sept at MDA to see Dr. Carol Lewis.
I know the 4th is initial and right now on the 5th I'm set for an "Ultrasound with biopsy" not entirely sure what to expect. And the care representitive told me to expect more procedures to be scheduled between now and then and I will find out about them when i arrive.
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Tagged: cutaneous melanoma
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